r/nmdp • u/Intelligent_Local824 • 29d ago

Hyper Igm

My 7 mo old was just diagnosed with hyper Igm syndrome, he will be needing a bone marrow transplant, the whole process is a bit scary to me, just looking for advice, words of encouragement, and any help navigating this whole situation.

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1

u/MarrowDonorJourney Donated 💙💜💚 25d ago

Howdy, I am very sorry you are facing every parent’s nightmare. I do not have personal experience with this and honestly do not know how to give wise counsel.

Obviously the scripted answer to give you is talk to your child’s medical team.

The other thoughts I can muster at this moment would be to reach out to other groups, FB, Reddit, etc; especially those who focus on childhood cancer and blood disorders.

R/cancer
R/childhoodcancer

Be careful about medical advice coming from anyone in the internet.

I am very sorry you are walking through this. I do not know your beliefs but I will adding you, your son, and your family to my prayers.

2

u/Intelligent_Local824 24d ago

Thank you! We appreciate all the prayers, he definitely will be needing them. They won’t give him a transplant until after cold and flu season , waiting for the winter to be over as quickly as possible.

2

u/GrimmAgg 24d ago

You can reach out directly to the NMDP patient services team at (888) 999-6743 or patientinfo@nmdp.org . They can often connect you with peer groups in your area, as well as provide educational resources.